Oesophageal Neuroendocrine Carsinoma

Hello Alewisia2ec5b7 

I am Brian, one of the Community Champions here on the online Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer however my reply will see it "bumped up" to the top of the page and I hope noticed by other members of the Neuroendocrine group.

I notice you said you have been "overwhelmed" by the discovery of this cancer and I can well appreciate this. Do please remember our Support Line is there for you both on (it's a free call) 0808 808 00 00 (8am to 8pm 7 days a week) and they are there for support, advice and even a chat. If you have a "Maggie's" near you -link here- "Maggie's" you can also call in and chat with them over a cup of tea - they are a fantastic cancer charity.

I hope the above helps - please do get back to me if i can do anything for you,

Best wishes - Brian.

Thanks Brian, 

I didn’t expect a response really because it’s so rare but in the New Year I will definitely call the support line. I feel I’m going to need it . 

Hello Alewisia2ec5b7 

I can appreciate your situation with a rare cancer but please don't feel you are travelling this journey alone. If you need to just chat at anytime this group on the Cancer Chat group is very active:

 Awake and up all night 

As your husband is undergoing Chemotherapy, this group may also benefit you both:

Chemotherapy forum .

I hope the above helps.

Best wishes - Brian.

Apart from my husband’s Neuroendocrine cancer probably stemming from lung, so much that you have described mirrors our situation. I can relate completely to your feelings and emotions. It’s a soul destroying situation. I pray you , I and all carers find the strength to support our suffering loved ones in their battle to recapture a worthwhile existence. I feel so lonely with only our dog for company while the hospice attempt to get his pain under control. We are waiting for his first Cof E MDT encounter as no staging yet and worry that he will be told “no treatment” or may not be fit enough for chemo etc.He too is stoic but knows that I will do much research and join the various sites like MacMillan, Neuroendocrine Cancer UK FB etc…God Bless you both and give you the strength you both need now and in the future. 

Thank you for your lovely reply. What an awful situation to have in common! 
I am so sad you feel so lonely. I think many of us are especially at a certain age when family has left. Not that you are our age I don’t  know. 
It is a lonely journey most of the time and I wish I could get out of my own head! 
Even with family and friends you don’t want to depress them by only talking about your very sick husbands all the time. 
It’s exhausting constantly looking at research etc. I don’t know if it helps or not. I have connected with a lovely Irish chap on FB who is bravely doing a little video story of his path through treatment. His is the same chemo as Martin’s so I wondered how he had coped. 
His name is Allan Jamieson. You might find it interesting. 
You must be terribly worried and my heart goes out to you. I must have cried buckets in those first 5 weeks! Now I still cry but mostly I’m just quietly terrified! 
Fingers crossed they get your husband’s pain under control and I wish you both love and luck in the coming days. 
IWe haven’t any dogs at the moment but I miss them all the time, they don’t say much but give lots of comfort. 
Please let me know how things are going and message me anytime, happy to share the burden xxxx

Thank you for reaching out..it really does help when you realise others have genuine empathy. At last it seems that higher fentanyl patch along with steroids have eased the pain although other things like arm weakness have now surfaced…it’s so hard to take in how a fit human person can become so weak so quickly. I’ve heard unofficially that the Coventry MDT have him listed for next Thursday so I’m hoping that soon we will have staging and an idea of what the way ahead entails. I can’t praise the Myton Hospital enough…don’t know where we both would have been if it weren’t for his admission. Seen Myton have just started a new project to help patients and carers in their battle against social isolation and loneliness..early days but something might come of it. I live in a small market town north of Coventry and am wondering if perhaps I should campaign for a support group as Im sure there are many people who for various reasons could find comfort in friendly meetings over coffee.. Food for thought once I know better what our future holds. 
my husband is 73 and Im a reasonable healthy 74 yr old. I lost my first husband very suddenly 23ys ago and so was very lucky to eventually have a second long marriage of 17years. 
I will try to find Allan ..not sure how to use this site for communication but I will follow you with special interest. 

My goodness isn’t this a tough ride! I was relieved to hear that your husband had some much needed pain relief only to hear that another problem had surfaced to deal with! I absolutely agree it is shocking seeing the change in a fit person happen so quickly. When it’s flu etc it is bad enough but you know it will pass quite quickly, this is really horrible and upsetting. I have to force myself to appear positive and a bit upbeat because despite the poor prognosis you can never say never.The worry is relentless though. 
Finding someone to have a coffee and a chat with is good. Can you leave your husband safely for a while just to grab some time to yourself? 
At the moment we are still trying to get used to this weird new world. And it isn’t easy. I’ve had to learn not to fuss because it makes him feel as though he’s already useless. And he’s grumpy poor thing sometimes and a bit snappy. I know it’s the illness and the fatigue and I’m trying not to bite back.

How was Christmas for you ? Difficult I imagine. Ours was good if we ignored the elephant in the room. We tried to pretend all was well because that’s what he wanted.One of our daughters stayed for nearly 3 weeks but flew back to Bali yesterday which was sad.

i feel exhausted from cleaning, cooking, food shopping , focusing on my husband etc and am looking forward to a week getting a few things done like hair and seeing a friend. Washing bedding and doing nothing! A breathing space. My husband said he wants to go away in our motorhome next week. And this is where the difficulties lie. I don’t have the energy to go anywhere and it’s cold and not appealing and I worry that he won’t cope. But now I’m feeling guilty because of this feeling that he should have his every wish no matter, but my children say I have to put myself first sometimes too! Can’t win! 
We carers have such a hard time with worry, loneliness and guilt. I even feel guilty for feeling low! 
It does help to talk and if you can find the energy to form a group to meet and chat or find one to go to it might help. I was sad to hear you lost your first husband but also glad you found happiness again.

Please let me know how you both are. Sounds like your hospital is good and that is reassuring. The waiting for results and answers is the worst. 
Message me anytime, happy to chat. 

Lots of love Ann xx

Allan is on Facebook 

Thank you for such an emphatic reply. It does hit a spot when one knows that others unfortunately can relate directly to one’s situation. Our Christmas was a non event as Dave really wasn’t part of the normal world because of his constant pain. We should have been leaving on 13th December in our Motorhome for three months on our usual Spanish rally. It looks likely that our motorhoming days will be happy memories. Van is in storage compound at present and I worry about it starting after a long park up and what to do about selling it eventually…but am forcing myself not to fret about that at present. It’s hard because I’m a doer and don’t like uncertainty.Hospice phoned yesterday to say Dave had had a fall and was being monitored for possible brain bleed but not to rush over as Im at my daughters for a couple of nights…company helps . Will see him later today though. It set me off thinking about what can happen once hospice discharge him when they can do no more pain wise. Hearing what you do and how it can wear one down so much, Im not sure that I can take on the responsibility of looking after Dave at home, keeping him safe, medicating and nurturing him. We did speak about care some time ago after I read on another MacMillan forum about what can happen during palliative home care. I want the best care for Dave at all times…his comfort is more important than me needing his presence. Folk and authorities might think Im callous and uncaring but I don’t feel that way….yet! 
I have someone coming tomorrow re fitting a stairlift as I thought he might be home later this week…think that might not be feasible now. Everything now hinges on what happens after Thursday when the Specialist MDT discuss his case bearing in mind that the more specialist staging tests still haven’t been done and how his strength progresses. I’m the worrier and doer while Dave is an accepting laid back person usually. 
I found Allan on FB thanks….will try to find out how I can communicate better with you via this group, FB etc… Meanwhile I wish you a decent day today and pray we both get through it as best as circumstances allow. You never know, maybe , just maybe our two motorhomes can join us up. 
Sending you love, prayers and eternal hope for us all….Marion (aka Auguste) Xx